The long journey: It seems like an age since last... - PMRGCAuk

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The long journey

Burnley1959 profile image
14 Replies

It seems like an age since last I've wrote a blog on this site, for those who can remember well done, I started approximately 2 1/2 years ago, taking pred 40 g if I remember correctly, everything going really smoothly Christmas time got down to 0 g, that's when the handbrake got applied, smash bam, thank you mam, major flareup at the beginning of the year, increase the pred to 10 mg, the problem I have now is the pain in both feet, no one else just that feet, which is hindering me walking and when I do walk I get a real way dull ache in both feet, question is anybody else suffer from this.

PS hope everybody is keeping well or as well as that is possible with this very frustrating condition which seems to be imposing on peoples lives.

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Burnley1959 profile image
Burnley1959
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14 Replies
PMRpro profile image
PMRproAmbassador

Sorry to hear your problems but we do warn again and again that that last couple of mg can sometimes take longer than all the rest put together!

You probably didn't need to go back to 10mg if you had got to 1mg without problems. 1mg can be plenty to keep the inflammation under wraps but without any pred the inflammation being created by a low level of disease activity slowly builds up again until you have symptoms - our dripping tap filling a bucket analogy. But that is what you have done so you need to work from there - over what time scale did you flare up and restart pred?

It may not be PMR causing the foot pain - and it is important to identify what IS causing the problem. Where exactly is the pain? Does anything improve it?

my.clevelandclinic.org/heal...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Of course we remember 😉…

So what dose are you on now?

Some people do seem to suffer with plantar fasciitis with their PMR -so perhaps it that come to play…

versusarthritis.org/about-a...

If you’d written foot pain in the title of your post you might have got related posts -

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to DorsetLady

PS - agree with PMRpro about the last few mgs… almost 3 years to get from 80mg to 5mg… then another 18 months to get from 5mg to zero

Burnley1959 profile image
Burnley1959 in reply to DorsetLady

Dorsetlady good afternoon Young lady after going down to 0mg I am now at 10mg which seems to be about right apart from as previously said the tools and feet. No idea whether it's related to PMR or it's just another symptom in this wonderful body of mine. I had actually started training again bits of cycling bits of gym work bits of swimming.

and again not sure if this is related but I have now got cellulitis in the left leg which is flipping sore.

and to cap it all off Burnley FC are going to be relegated we always look on the bright side of life ha ha. Thank you most kindly for your replies ladies

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Burnley1959

Didn’t like to mentioned the footie -thought you had enough to contend with 😂🤣

Cellulitis ? Does get mentioned from time to time- recent post which also brings up related ones -may help.

healthunlocked.com/pmrgcauk...

tangocharlie profile image
tangocharlie

Lots of us with PMR also have plantar fasciitis, it may be connected or it may just be an age thing as it's common. Your GP can assess you for this and possibly refer you to a podiatrist. For some people it goes awway eventually, others it doesn't. In my case exercise and splints didn't help, but steroid injections directly into my feet done by my GP were miraculous. I'd go to a GP first and see what they say before shelling out for insoles etc.

Pixix profile image
Pixix

I’ve just had a bad bout of plantar fasciitis,but I had 2 bouts over 20 years before I got PMR. There are good exercises that help, & I already have insoles & my feet are under hospital care!! Before then I had a steroid injection that helped the first bout of it. I have developed bad osteoarthritis in my toes over the past few years, don’t think it’s connected with PMR at all.

PMRpro profile image
PMRproAmbassador in reply to Pixix

Apparently extracorporeal shockwave therapy is brilliant for PF.

Pixix profile image
Pixix in reply to PMRpro

Thankfully, the extra inch raise on the heel of my insoles worked, & it went!! But next time (hope there isn’t one, but that was my third or fourth ‘attack’) I will push to try that! As the insoles cost over £100 a pair I think the best route is steroid injections (quicker, too, unless you already have custom built orthotics), or the shockwave therapy. I had a podiatrist appointment this afternoon,& I am allowed one new free pair of insoles this year…yippee!!!

PMRpro profile image
PMRproAmbassador in reply to Pixix

I have to pay for mine here!!! Tax deductible though ...

Pixix profile image
Pixix in reply to PMRpro

Whoooops, & here’s me moaning I only get one free pair a year!! In the first year, I blithely said I’d like to buy a couple of pairs so id have one for inside shoes,one for outside & one for walking boots! I’m very restricted with the shoes I’m allowed to wear now, it’s trainers, trainers or walking boots, really! When she said that would be nearly £250, I changed my mind!! But now I’ve got 3 pairs the same (just differing ages) & a 4th pair due in, I’m lucky!

PMRpro profile image
PMRproAmbassador in reply to Pixix

Think I was 180 euros for the fitting and a pair. Then he adapted another not quite right pair for 60 euros. I don't buy cheap shoes but the insoles cost more ...

Pixix profile image
Pixix in reply to PMRpro

Sounds about the same, really. I hadn’t really thought of it that way, but, yes, that’s right! Insoles cost more than shoes, LOL! S x

whitefishbay profile image
whitefishbay

Sorry to hear it. I too have pain in my feet and finally diagnosed with arthritis. I have osteophytes (bone spurs on top of my feet) and have just had steroid injections which have helped. Probably nothing to do with my past pmr. Whatever you have to try to keep moving.

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